Health Expectations

Background and aimLong Covid can be a stigmatising condition, particularly in people who are disadvantaged within society. This may prevent them seeking help and could lead to widening health inequalities. This co-produced study with a Community Advisory Board of people with Long Covid aimed to understand healthcare and wider barriers and stigma experienced by people with probable Long Covid. MethodsAn active case finding approach was employed to find adults with probable, but not yet clinically diagnosed, Long Covid in two localities in London (Camden and Merton) and Derbyshire, England. Interviews explored the barriers to care, and the stigma faced by participants and analysed thematically. This study forms part of the STIMULATE-ICP Collaboration. FindingsTwenty-three interviews were completed. Participants reported limited awareness of what Long Covid is and the available pathways to management. There was considerable self-doubt among participants, sometimes reinforced by interactions with healthcare professionals. Participants questioned their deservedness of seeking healthcare support for their symptoms. Hesitancy to engage with healthcare services was motivated by fear of needing more investigation and concerns regarding judgement about ability to carry out caregiving responsibilities. It was also motivated by the complexity of the clinical presentation and fear of all symptoms being attributed to poor mental health. Participants also reported trying to avoid overburdening the health system. These difficulties were compounded by experiences of stigma and discrimination. The emerging themes reaffirmed a framework of epistemic injustice in relation to Long Covid, where creating, interpreting, and conveying knowledge has varied credibility based on the tellers identity characteristics and/or the level of their interpretive resources. ConclusionWe have developed recommendations based on the findings. These include early signposting to services, dedicating protected time to listen to people with Long Covid, providing a holistic approach in care pathways, and working to mitigate stigma. Regardless of the diagnosis, people experiencing new symptoms must be encouraged to seek timely medical help. Clear public health messaging is needed among communities already disadvantaged by epistemic injustice to raise awareness of Long Covid, and to share stories that encourage seeking care and to illustrate the adverse effects of stigma. Patient or Public ContributionThis study was co-produced with a Community Advisory Board (CAB) made up of twenty-three members including healthcare professionals, people with lived experience of Long Covid and other stakeholders.

Background and aimLong Covid is a health condition that continues to be challenging in terms of obtaining care and support, even in the fourth year following its emergence. This study, which forms part of the STIMULATE-ICP study in England, explores the barriers and facilitators people with Long Covid face when trying to access care, as well as experiences in relation to stigma, discrimination, and inequitable treatment. MethodsThe study was co-designed with people with lived experience of Long Covid. People attending three post-covid services in England were invited to participate by clinic staff. Twenty-three participants were interviewed about their experiences in relation to barriers and facilitators of accessing adequate care, including experiences of being treated unfairly. Interviews were analysed thematically. FindingsParticipants experienced difficulties in accessing and receiving appropriate support from primary and secondary care but generally care and support improved once participants were under the care of a Long Covid service. Positive interactions with clinicians who were knowledgeable and supportive helped to foster good patient experiences when accessing Long Covid care. Inequalities in accessing care were reported in the form of experiences of gender and race discrimination. People with previous and existing conditions reported further stigmatisation. Financial barriers to care existed and there were also difficulties faced by those who got infected with COVID-19 early in the pandemic. The impact of Long Covid on mental health was evident, as was the stigma related to mental health and the inadequacy of mental health service provision for people with Long Covid. Some participants who worked within the National Health Service (NHS) perceived their professional position as a facilitator to accessing Long Covid care. However, some NHS employees also reported the negative impact of Long Covid on their work, the lack of employment support available, mistreatment from colleagues, and dismissal of professional knowledge. ConclusionOur findings highlight a range of barriers to accessing adequate Long Covid care, with women, ethnic minorities and people with co-occurring conditions experiencing intersectional stigma. We recommend a move towards a healthcare system that is sensitive to intersectional disparities in access to care and is mindful of how stigma can reinforce these inequalities. This would speak to removing barriers to care and foster a more positive experience for people living with Long Covid already disadvantaged by structural and systemic discrimination.

BackgroundEffective delivery of psycho-oncological support requires understanding of client perceptions of counselling service effectiveness, psychosocial outcomes, and meeting of client support needs and expectations. ObjectiveThis study aimed to describe perceptions of clients accessing psycho-oncological counselling for people directly or indirectly affected by cancer, and describe perceived psychological distress, depression, and anxiety from pre-to post-counselling. MethodsSouth Australian psycho-oncological counselling service clients were recruited (n=28). Psychological distress, anxiety, and depression were assessed before and after counselling sessions. Client expectations, experiences, and counselling outcomes were examined via pre-post-tests, and thematic analysis. ResultsClients reported reduced anxiety (t=-2.31, p=.029), depression (t=-2.51, p=.018), distress (t=-4.19, p<.0001), and global mental health symptomology (t=-2.79, p=.009). Four themes were identified: having no expectations, needing help managing emotions, seeking coping strategies, and seeking better understanding of their experience. Client expectations were satisfied (92.8%), regardless of counselling reason. ConclusionBenefits of counselling included reduced symptomology, receipt of knowledge and skills, and increased ability to manage everyday life. Supportive counselling significantly reduces distress and symptoms of anxiety and depression while supporting client and family functioning during cancer treatment. ImplicationsIndividual supportive counselling plays an integral role in lives of cancer patients and family members. Clients face concerns relating to cancer prognosis (e.g., recurrence fear), and to broader related experiences (e.g., social dynamics). Complex needs across cancer experience as a patient, carer, or other family member, requires that psycho-oncological counselling targets major client expectations, promotes benefits of counselling, and strategies for managing daily life events.

The COVID-19 pandemic acted as a "super-catalyst" in accelerating the United Kingdom transition to remote health and social care, while exposing and deepening existing inequities. The 18-month mixed-methods longitudinal CICADA study explored this from the perspective of disabled individuals from minoritised ethnic groups (including undocumented migrants and asylum seekers) during and after the pandemic. Since our aim was to inform improvements, we used an asset and strengths-based approach underpinned by the embodiment model of disability and intersectional theory. Here we report on findings from 271 semi-structured interviews with disabled individuals from minoritised ethnic groups, follow-on workshops with interviewees in April and September 2022, and 4 key informant interviews. Findings revealed widespread dissatisfaction. Many found the shift to remote care inaccessible and disempowering. Challenges included difficulties in securing appointments, disrupted patient-clinician relationships, little regard for holistic care or comorbidities, and systemic exclusions due to intersecting and discriminating factors of language, accent, disability and complex needs, digital precarity, and undocumented status. Often, service management of expectations would have improved experiences. The increased burden from health and social care support-seeking counter-intuitively worsened once pandemic restrictions eased and led many to give up; others bypassed general practice or raised complaints, or relied on self-management, traditional remedies or informal support networks. Many resorted to costly and unaffordable private care, often specifically from within their communities, and often having never registered with the National Health Service. There is an urgent need for a more inclusive, tailored approach to health and social care that considers intersecting disadvantages of race, disability, citizenship and socioeconomic status, facilitates community connections and empowerment, and provides support for self-care, alternative care and education. By foregrounding community voices, this research offers valuable insights for policymakers and providers aiming to address disparities and improve health and social care outcomes for marginalized populations.

Poverty impacts negatively on childrens health and future life chances. Access to the UKs National Health Service (NHS) is based on clinical need rather than the ability to pay but horizontal inequities in access exist. Children North East, a charity supporting children experiencing poverty, wanted to develop a Poverty Proofing(C) Health tool to help NHS services reduce the impacts of poverty on access. This study aimed to understand barriers to healthcare access faced by families living on low incomes to support development of the tool. Twenty parents and seven Voluntary Community Social Enterprise sector staff participated in qualitative interviews or focus groups. Data were analysed thematically, and three main themes were identified as impacting access to health care: hidden costs, securing appointments and developing relationships with health care providers. We conclude that low-income families experience both financial and other barriers to accessing NHS health care and that these barriers are exacerbated for low income families living in rural areas.

BackgroundOne in three people worldwide will experience chronic musculoskeletal pain (CMP). Due to the long-standing nature of CMP, it is inevitable that people with CMP will have to engage in some form of self-management. As highlighted by multiple clinical practice guidelines, it becomes pivotal that healthcare professionals provide effective self-management support. However, the current effectiveness of self-management interventions seems equivocal. This may be due to self-management interventions not being developed based on an in-depth understanding of the self-management challenges experienced by people with CMP. ObjectivesThis study explored the everyday barriers and facilitators for self-management experienced by people with CMP currently undergoing rehabilitation in a municipality setting. MethodsWe conducted 11 one-time, single-person, qualitative interviews of people living with CMP. The interviews were based on a semi-structured interview guide with open-ended questions and analyzed using an inductive thematic analysis to identify the participants experienced barriers and facilitators for self-management in everyday situations. FindingsThree overarching barriers emerged: 1) biographical disruption, 2) uncertainty and psychological distress, and 3) lack of social support. Further, three overarching facilitators emerged: 1) acceptance and optimism 2) pain-relieving strategies and 3) social support. These barriers and facilitators far exceeded participants capability to control their pain. ConclusionThe majority of the barriers and facilitators concerned the management of cognitive, emotional, social or personal consequences of CMP. Integrating these barriers and facilitators into the development of future self-management interventions may have the potential to improve the effectiveness of these interventions. SignificanceQualitative studies exploring self-management of chronic pain traditionally focus on identification of barriers for pain-management. This study identified several interconnected barriers and facilitators which influenced CMP patients everyday self-management. This provided targets for designing self-management interventions to support patients pain-related, psychological, and social self-management practices in everyday contexts. O_TBL View this table: org.highwire.dtl.DTLVardef@94ebaorg.highwire.dtl.DTLVardef@10f9d8forg.highwire.dtl.DTLVardef@3141e3org.highwire.dtl.DTLVardef@1dcb1aborg.highwire.dtl.DTLVardef@1488df_HPS_FORMAT_FIGEXP M_TBL C_TBL

ObjectivesTo explore the perceptions and experiences of barriers and facilitators to accessing Long COVID community rehabilitation. DesignWe used a qualitative descriptive [1] design over two rounds of data collection with three participant groups: i) people with experience of rehabilitation for Long COVID (PwLC); ii) NHS staff delivering and/or managing community rehabilitation services (allied health professionals (AHPs)), and iii) NHS staff involved in strategic planning around Long COVID in their health board (Long COVID leads). SettingFour NHS Scotland territorial health boards. Participants51 interviews: eight Long COVID leads (11 interviews); 15 AHPs (25 interviews) and 15 PwLC (15 interviews). ResultsThree key themes were identified: i) Accessing care for PwLC, ii) Understanding Long COVID and its management; and iii) Strengths and limitations of existing Long COVID rehabilitation services. ConclusionsOrganisational delivery of Long COVID community rehabilitation is complex and presents multiple challenges. In addition, access to Long COVID community rehabilitation can be challenging. When accessed, these services are valued by PwLC but require adequate planning, publicity, and resource. The findings presented here can be used by those developing and delivering services for people with Long COVID. Strengths and limitations of this studyO_LIThis is the first study to explore perceptions and experiences of different community rehabilitation models for Long COVID in the Scottish context C_LIO_LIPerspectives of people with Long COVID, staff delivering services, and staff leading on Long COVID in four geographically diverse Scottish health boards are included C_LIO_LIThe strengths and limitations of different Long COVID rehabilitation service model components are highlighted C_LIO_LIThe rapidly evolving nature of Long COVID and its management resulted in fewer distinct differences between the four health boards than originally anticipated C_LI

ObjectivesTo understand the opportunities and practices that can support responsive health care for forced migrant communities. DesignQualitative study of five transnational case examples of services actively working to improve access and experiences of care for forced migrant communities. One strand of the MORRA Study. SettingFive services (Australia, Belgium, UK) providing a range of care (primary care, health advocacy, education and support, holistic health screening, care planning/coordination, transcultural mental health care). Delivered through state and not-for-profit structures in initial and contingency accommodation sites, health clinics, and community spaces. Data collection took place between July and October 2022. Participants47 participants including forced migrants using or having used one of the five services, service leads, clinical and non-clinical workers (paid and volunteer), interpreters, and service partners. Services supported recruitment of a crude representative sample of worker roles and service users/clients. Participants were required to speak one of nine languages for which we had translated study materials. Main outcome measuresExperiences, practices, knowledges, skills and attributes of workers; experiences of forced migrants engaging in services. ResultsServices showed a willingness to innovate and work outside existing practice and organisational structures, including a micro-flexibility in their interactions with patients, and through the creation of safe spaces that encouraged trust in providers. Other positive behaviours included: engaging in intercultural exchange; facilitating the connection of people with their cultural sphere (e.g. nationality, language); and a reflexive attitude to the individual and their broader circumstances. Social and political structures can diminish these efforts. ConclusionsEnvironments that enable good health and support forced migrants to live lives of meaning are vital components of responsive care. This requires flexibility and reflexivity in practice, intercultural exchange, humility, and a commitment to communication. A broader range of caring practitioners can, and should, through intentional and interconnected communities of care, contribute to the health care of forced migrants. Opening up health care systems to include other state actors such as teachers and settlement workers and a range of non-state actors that should include community leaders and peers and private players is a key step in this process. Future work should focus on the health and health service implications of immigration practices; the inclusion of peers in a range of health care roles; alliance-building across unlikely collaborators and the embedding of intercultural exchange in practice. Findings of this study are supported by our systematic review (publication forthcoming). Strengths and limitations of this studyO_LIWe engaged with critical perceptions of care from across a range of international jurisdictions, community and health service contexts, and clinical and non-clinical professionalisms. C_LIO_LIA diverse and contrasting research team, including a multilingual community researcher, NHS clinicians, voluntary sector advocacy services, and academics, brought contrasting perspectives and backgrounds and broadened reflections. C_LIO_LIUnexpected restrictions (predominantly service pressures and restrictions placed by service hosts - accommodation providers) meant we engaged only a small number of service users and only with service users from some services. C_LI

BackgroundQualitative research has identified factors affecting transition from child mental health services (CAMHS) to adult mental health services (AMHS) but it is unclear which of these factors may lead to disengagement from the young persons view. MethodsN= 272 participants (mean age = 20+/-2.31, 81% females) who had experience with the UK mental healthcare system (patients, carers, health workers) attempted the survey but only participants who had been treated in CAMHS were included in this study, resulting in a total N=144 (mean age = 19.8+/-2.3, 83% female). This study used a cross-sectional, quantitative survey assessing 12 pre-transition, 16 peri-transition, and 11 post-transition variables. The Client Attachment to Therapist Scale (CATS) was used to measure client attachment to CAMHS and AMHS therapists. ResultsSuccessful transition from CAMHS to AMHS was significantly predicted by using a helpful care plan, continuity of treatment between CAMHS and AMHS, and being engaged in a transition service. However, few clients were aware of transition services at the time of transition. Transition satisfaction was significantly predicted by the same variables. In addition, GP support during the transition, and a more secure attachment to AMHS therapists were associated with higher transition satisfaction. ConclusionsThe results suggest clients transition process might be significantly improved by focusing on useful individualised care plans, and ensuring continuity of treatment. Transition success and satisfaction could also be improved by making clients aware of and engaging them in transition services, involving GPs, and working on a secure attachment on the AMHS side.

BackgroundPatient non-attendance remains a major challenge for health services. Few studies have examined how health service providers think about, potentially address, and prioritise non-attendance within the scope of their practice. This study aimed to (1) explore healthcare professionals perspectives, beliefs, and opinions about the impact of patient non-attendance within a publicly-funded outpatient physiotherapy clinic context; (2) explore perceived barriers and facilitators associated with the implementation of non-attendance mitigation strategies; and (3) identify health service staff generated solutions to address perceived barriers and enhance facilitators. O_TBL View this table: org.highwire.dtl.DTLVardef@a30e75org.highwire.dtl.DTLVardef@10a5b0borg.highwire.dtl.DTLVardef@df5296org.highwire.dtl.DTLVardef@1a70bd7org.highwire.dtl.DTLVardef@1fa66a4_HPS_FORMAT_FIGEXP M_TBL C_TBL MethodsA focus group discussion and semi-structured interviews were conducted between June 2023 to January 2024 with 27 physiotherapy department clinic outpatient staff involved in operationalising clinic referral processing, appointment scheduling, or providing care to patients. Data was analysed using a hybrid inductive/deductive framework analysis approach. ResultsParticipants indicated that non-attendance had predominantly negative implications for the health service, healthcare provider, and patient. The interconnected issue of non-attendance encompassed multiple areas and were broadly categorised into five inductively identified themes: impact of non-attendance, perceptions of value, material deprivation, service delivery and built environment, and professional role and identity. Non-attendance mitigation strategies generated by participants were deductively mapped to the theoretical domains framework (TDF) to explore behavioural determinants that may influence successful implementation. This included knowledge, reinforcement, goals, optimism, memory, attention and decision-making, environmental resources and context, and emotions. ConclusionsStaff identified multiple strategies for reducing non-attendance; implementing many of these strategies would require additional resourcing. Research determining the effectiveness of such strategies both in the short-term and long-term following implementation into practice remains a priority for future investigation.

BackgroundLiving with multiple long-term conditions (MLTC) is becoming increasingly common with far-reaching consequences for individuals and healthcare systems. People with MLTC often face complex care pathways through health systems - especially hospitals, which are largely configured for specialist treatment of single conditions - yet evidence on people with MLTCs lived experience in the hospital setting is limited. This study aimed to understand the hospital care experiences of people living with MLTC who had recently had an inpatient stay. MethodsPeople with MLTC who had experienced an inpatient stay in hospital within the previous six months were recruited via three hospitals in England and via patient networks. Semi-structured one-to-one interviews were conducted with each participant, focussing on their experiences of care from admission to discharge. An inductive thematic analysis was undertaken. ResultsA total of 44 people (mean age 68.4 years, 23 women) who reported living with between 2 and 11 long-term conditions, the majority of whom (96%) reported that their most recent hospital stay was unplanned, participated in the study. Three themes were constructed from the interview data, reflecting perceptions at individual, interpersonal and organisational levels. Participants experiences were shaped by internalised narratives of hospital care, where care was expected to be focussed primarily on single conditions within a resource-constrained environment. Relationally, the degree of alignment between clinician and patient knowledge on conditions was a key contributor to whether hospital care was experienced positively or negatively, and participants perceptions of organisational constraints to holistic care gave insights into their views on system-level barriers shaping the provision of care for MLTC in the hospital setting. ConclusionExperiences of inpatient hospital care for people with MLTC are complex, diverse and shaped by expectations of care in a specialist setting configured to provide care for single conditions. Healthcare professionals should incorporate patients experiential expertise into decision-making processes through consultation with people with lived experience of MLTC. Redesigning hospital services to provide holistic care will require flexibility to respond to the wide spectrum of MLTC experiences.

BackgroundMany pregnant women have a history of trauma, such as abuse or violence, which can significantly impact their mental and physical health. Discussing these experiences in maternity care presents an opportunity to support women, reduce stigma, and connect them with resources. However, concerns persist about stigmatisation, re-traumatisation and unwarranted safeguarding referrals. As part of a larger study that aimed to develop a methodology for conducting trauma discussions, interviews were carried out with a range of stakeholders. MethodsSemi-structured interviews were conducted with women with trauma histories (experts by experience; n=4), representatives of voluntary sector organisations (n=7), and healthcare providers (n=12). Reflexive thematic analysis was used to analyse the data. The study employed a critical participatory action research approach, supported by a Patient and Public Involvement & Engagement group (named as the Research Collective for this study) comprising experts by experience, maternity care professionals, and voluntary sector practitioners. The group contributed to both the design and analysis phases of the research. FindingsFive key themes emerged from the interviews, exploring both the benefits and challenges of trauma discussion in maternity care. Participants reflected on who should lead these discussions, the appropriate settings and timings, and strategies for effective communication. The emotional and training needs of care providers conducting trauma discussions were also highlighted. ConclusionTrauma discussions in maternity care are a complex but necessary intervention that require careful consideration of timing, communication, and referral pathways. This paper offers concrete steps towards creating a more empathetic and supportive maternity care environment. Statement of SignificanceO_ST_ABSProblemC_ST_ABSTraumatic experiences such as abuse or violence contribute to long term mental and physical health problems. What is already knownRaising the issue of previous trauma within maternity care offers an opportunity to provide support, but if handled insensitively can be distressing to women. What this paper addsThis paper shows that discussing trauma is complex and requires a system-wide approach which addresses when, where, and how to talk about trauma, referral pathways, and the need for training and support for maternity care providers. It also offers insights on conducting these discussions sensitively and effectively.

People with a learning disability experience marked health inequalities. In Wales, Acute Learning Disability Liaison Services (ALDLS) are delivered by specialised learning disability services, and all roles within them are undertaken by Learning Disability Liaison Nurses (LDLN). These services aim to enable access to, and delivery of, secondary care by supporting reasonable adjustments, facilitating communication, and coordinating care for people with learning disability during hospital encounters. However, independent evidence of the impact of ALDLS on patient care remains limited. This evaluation tries to address this evidence gap by examining hospital staff perceptions of the visibility, role, and impact of ALDLS across Welsh Health Boards, with the aim of informing service design and development and improving secondary care access and care for people with learning disability. The service evaluation used a qualitative approach involving interviews and a focus group with hospital staff across the seven Welsh Health Boards who had experience working with or interacting with ALDLS staff to care for patients with learning disability. Findings cover six key areas including i) visibility and delivery of ALDLS, ii) Barriers and challenges to effective ALDLS delivery, iii) Enablers of effective ALDLS delivery, iv) Positive impacts for patients with learning disability, v) Negative impacts and unintended consequences when the service is absent or limited, and vi) Participants recommendations for future improvements of ALDLS. To synthesise the findings, we developed an overview diagram, which illustrates how ALDLS may influence care quality in acute hospitals. The overview places the liaison service at the centre, showing how organisational enablers and barriers shape its delivery, and how its core functions support improvements in safety, timeliness, effectiveness, efficiency, equity, and patient-centred care. From the findings we have identified recommendations for practice and policy. These include that ALDLS should be recognised as a core, safety-critical component of acute hospital care for people with a learning disability, rather than an optional add-on. In practice, services should be more visibly embedded within routine pathways, with consistent site-based presence, clear referral criteria, early identification through electronic flagging and notification systems, and routine involvement in multidisciplinary planning for complex admissions and procedures. At policy level, ALDLS provision should be recognised within equality and patient safety frameworks as an essential service requiring sustained investment, national minimum configuration standards, adequate staffing, and better-integrated digital systems to support continuity, equitable access, and person-centred care.

BackgroundHealthcare organisations that have a research culture within their practice (e.g. evidenced based and evidence informed practice) report better outcomes for their service users. There are however reported barriers to embedding research into practice. This includes time, knowledge, motivation, ability, resources, and access to organisational support. Psychological Services within the NHS regularly embed evidence-based practice as part of the care provision for their service users. However, at present little is known of the extent, capacity, and research readiness of those that practice within this sector. AimTo understand capacity, engagement and research readiness within the psychological services team at an NHS trust within the UK. MethodsMixed methods pilot study using cross sectional survey. Collecting both quantitative and qualitative data. 35 people were recruited from a pool of 89 people who attended a psychological services webinar in April 2024. Quantitative data was analysed on a descriptive level; qualitative data was analysed using thematic analysis. Findings and discussionResults indicate the value in the use of a mixed method survey to assess research readiness and capacity to those within psychological services practice. Overall response rate was good (39%) with a 100% completion rate of all questions. Both the quantitative and qualitative data revealed that participants wish to engage in research but encounter barriers such as capacity and time. Respondents were also unsure on the level or organisational support for research engagement and activity, unsure on the pathways to secure research time (e.g. funding opportunities), and findings also illustrate issues around practitioner confidence in applying research skills. Our findings show the acceptability of assessing research readiness within psychological practice and highlight several areas of need for practitioners to facilitate full research engagement. These findings will now seed a larger more ambitious assessment of research readiness.

PurposePeople living with MLTCs attending consultations in primary care frequently have unmet social care needs (SCNs), which can be challenging to identify and address. Artificial intelligence (AI) derived clusters could help to identify patients at risk of SCNs. Understanding the views of people living with MLTCs and those involved in their care can help inform the design of effective interventions informed by AI-derived clusters to address SCNs. MethodsQualitative study using semi-structured online and telephone interviews with 24 people living with MLTCs and 20 people involved in the care of MLTCs. Interviews were analysed using Reflexive Thematic Analysis. ResultsPrimary care was viewed as an appropriate place to have conversations about SCNs. However, participants felt health care professionals lack capacity to have these conversations and to identify sources of support. AI was perceived as a tool that could potentially increase capacity for this but only when supplemented with effective, clinical conversations. Interventions harnessing AI should be brief, be easy to use and remain relevant over time, to ensure no additional burden on clinical capacity. Interventions must allow flexibility to be used by multidisciplinary teams within primary care, frame messages positively and facilitate conversations that remain patient centered. ConclusionOur findings suggest that AI-derived clusters to identify and support SCNs in primary care have perceived value, but there were some concerns including the need to consider personal context. AI derived clusters can be used as a tool to inform and prioritise effective clinical conversations. Conference names, dates and locations for any prior presentationsO_LIBritish Journal of General Practice Research Conference, March 2024, London. C_LIO_LISchool of Academic Primary Care Southwest Conference, March 2024. Cardiff. C_LIO_LIFaculty of Medicine Research Conference, June 2024. Southampton. C_LI

Background: Long Covid affects millions worldwide and disrupts the personal, professional, and social lives of those affected. Yet, insights on the day-to-day experience of living with Long Covid, how people adapt to the condition, and how they experience care remain limited. Methods: Between November 2024 and February 2025, we recruited people living with Long Covid through Long Covid related studies and patient networks. Data were collected through a one-time semi-structured survey, completed using a speech-to-text feature with automatic transcription, and addressing 1) key events and experiences, 2) coping and support strategies, and 3) advice to others affected. We applied an inductive thematic analysis to develop a framework of key themes. Results: We included 137 participants (median age 48 years, 73.7% women, median three years since SARS-CoV-2 infection). Analysis yielded 13 sub-themes within four key themes: medical issues; social, occupational and health care impact; barriers to recovery; and resources and strategies. Participants described a broad range of symptoms, most notably fatigue, cognitive difficulties, post-exertional crashes and psychological symptoms including depression and, in some cases, suicidal thoughts. These symptoms profoundly disrupted their social, working and family lives. In severe cases, independent living became impossible, with social isolation, severely reduced activity, and financial difficulties. Many described a long diagnostic journey in which symptoms were frequently dismissed as psychological and early advice to stay active that worsened their condition. The health care and social security systems were seen as ill-equipped to support people affected by Long Covid. With no effective causal therapies, treatment focused on symptom relief and participants tried many complementary and alternative treatments. Pacing was the only strategy widely used and perceived as effective in preventing crashes, alongside lifestyle adjustment, peer support, and maintaining hope. Conclusion: These narrative accounts reveal a multidimensional burden of Long Covid, one that is exacerbated by how affected people are treated within the health and social systems. These findings underscore the need for empathic, knowledgeable care, validation of people's experiences, and policy frameworks equipped to recognize and support people with Long Covid. Patient or Public Contribution: This study is about the lived experiences of people affected by Long Covid. During the conceptualization phase, we consulted three people with lived experience of Long Covid to discuss the relevance of the research questions and study design. All participants received a newsletter with a plain language summary of interim findings. Following completion of this analysis, we conducted a focus group discussion with eight participants to validate our findings, identify gaps, and ensure that the findings accurately reflected their experiences. Feedback from this process informed the final manuscript.

Background Advice and Guidance (A&G) enables primary care clinicians to seek specialist input, supporting decision making and avoiding unnecessary referrals. The use of A&G has significantly expanded, accelerated by COVID19 and contractual changes. While A&G is intended to streamline elective care, concerns persist regarding workload shift, variable responsiveness, and system usability. Despite growing policy emphasis, little is known about why clinicians choose to use A&G. Aim Explore the current use of A&G within primary care, focusing on decision making processes which underpin PCCs' decision to use A&G. Design and Setting Qualitative study set in English Primary Care Method Twenty semi structured video interviews were conducted with primary care clinicians purposively sampled for maximum variation. Topic guides were developed with PPIE input and refined iteratively. Data were analysed using reflexive thematic analysis within an interpretive description framework, with themes developed collaboratively and refined through discussion with researchers and PPIE contributors. Ethical approval was obtained (REC 333799). Results Four overarching themes encapsulate clinicians' decisions to use A&G: clinical presentation (acuity and complexity), navigating healthcare pathways, previous experiences of A&G, and using A&G to validate clinical decision making. Barriers included delayed responses and uncertainty about inequitable workload distribution. These factors shape how effectively A&G could be integrated into routine practice. Conclusion Primary care clinicians use A&G to support patient care and aid decision-making, but its effectiveness depends on timely, clinically helpful responses. Ensuring responses remain appropriate to primary care remit and capacity will be essential if A&G becomes the main route into elective care.

IntroductionUnpaid caregivers play a key role in supporting people with cancer. However, their needs and perspectives are often overlooked, and few healthcare institutions offer dedicated support programs. To address this, we assessed and compared the perceptions and informational needs of unpaid caregivers and cancer patients. MethodsCaregivers (N=115) and cancer patients (N=99) from a large urban cancer centre completed a one-time survey evaluating their perceptions of the medical care and caregiver support they had received, their informational needs, as well as their health literacy and computer proficiency. Caregivers also completed validated scales evaluating caregiver burden, preparedness, competence, and reward. We compared patients and caregivers reported perceptions and analyzed their informational needs across knowledge domains. We conducted stepwise regression to understand the relationship between participant characteristics and scores, including health literacy and caregiving burden, and their informational needs. ResultsPatients underestimated many aspects of caregivers experience, and caregivers were less satisfied than patients with the medical care received. Caregivers with higher health literacy had lower informational needs and caregiver burden. Both groups expressed a strong need for medical information in addition to psychological, social, and practical support. ConclusionThese results reveal a pressing need for proactive medical and practical training for caregivers to complement psychological interventions. Furthermore, interventions to improve public health literacy may enable those who become caregivers to better navigate the challenges of their role.

IntroductionLong COVID is a multisystem condition that negatively impacts daily function. Pacing is a self-management strategy to mitigate symptoms. Our aim was to describe experiences of pacing from the perspectives of adults living with Long COVID. MethodsWe conducted a community-engaged qualitative descriptive study involving one-on-one online interviews with adults living with Long COVID from Canada, Ireland, United Kingdom, and United States to explore experiences of disability. We asked participants about strategies they used to deal with health challenges living with Long COVID. Interviews were audio recorded and transcribed verbatim. We analyzed data using group-based content analytical techniques. ResultsAmong the 40 participants living with Long COVID, the majority were women (n=25; 63%), white (n=29;73%) and heterosexual (n=30;75%). The median age of participants was 39 years (25th, 75th percentile: 32, 49). Most participants (n=37;93%) used pacing to mitigate or prevent symptoms. Participant described experiences of pacing across five main areas: 1) using pacing as a living strategy (pacing to mitigate multidimensional health challenges; applying pacing to many types of activities; process of pacing experienced as a moving target; pacing experienced as a helpful strategy, but not a cure for Long COVID); 2) learning how to pace (acquiring knowledge about pacing; developing strategies and skills to support pacing); 3) encountering challenges with pacing (learning how to pace; experiencing inequitable access to pacing; experiencing stigma and judgement; undergoing psychological and emotional adjustment from beliefs of fighting or pushing through to balancing rest with activity; making sacrifices; and encountering unexpected obstacles); 4) experiencing consequences of not pacing; and 5) conceptualising and describing pacing using analogies or metaphors. DiscussionPacing is a challenging and complex strategy used to mitigate symptoms of Long COVID. Healthcare providers should work collaboratively with patients to further refine and implement this strategy, when appropriate.

BackgroundPatient engagement in research enriches study design, conduct, and dissemination by integrating lived experiences of patients into the research process. Although patient engagement is increasingly common in clinical research settings, it remains rare in preclinical (i.e. laboratory based) research. To explore this gap, we conducted an interview study to understand how early adopters have implemented patient engagement in this area, focusing on the challenges and benefits of their approach. MethodsWe conducted semi-structured interviews of patients (n=15) and researchers (n=14) with previous preclinical patient engagement experience. Interviews were transcribed and conducted using an inductive, thematic content analysis, which allowed for bottom-up analysis of interview data. Our team inclusive of patients, clinical, preclinical and patient engagement researchers identified, reviewed, and refined emerging themes. ResultsWe identified five themes. Researchers and patients highlighted the necessity to adopt a thoughtful and tailored approach for each preclinical engagement initiative (Theme 1). Clear communication was deemed critical, suggesting the need for a clear and shared vocabulary without technical jargon (Theme 2). This includes taking time to cultivate personal relationships, co-develop engagement activities to meet patient and researcher preferences and needs. In addition, varied goals for engagement in preclinical research between researchers and patients was underscored (Theme 3), indicating the need to discuss aims and motivations early and often as well as to co-develop mutually beneficial strategies. Researchers and patients also discussed how they require a better understanding of the value of preclinical patient engagement (Theme 4). This could be fostered through education and illustrative case examples. Finally, a shift in research culture was deemed necessary (Theme 5), and called for stronger institutional support, efficient channels to connect preclinical researchers and patients, as well as initiatives that recognize and champion preclinical patient engagement. ConclusionOur study identified five common themes in preclinical patient engagement which can help the research community facilitate meaningful engagement of patients in preclinical laboratory research. FundingThis work was supported by a Canadian Stem Cell Network Ethical, Legal and Social Implications Operating Grant. Patient engagement was supported by a Canadian Institutes of Health Research (CIHR) Strategy for Patient Oriented Research Catalyst Grant: Patient-Oriented Research. MML is supported by The Ottawa Hospital Anesthesia Alternate Funds Association, a University of Ottawa Junior Research Chair in Innovative Translational Research as well as the Canadian Anesthesia Research Foundation funded Canadian Anesthesiologists Society Career Scientist Award. AAM is supported by the Manitoba Medical Services Foundation Dr. F. W. DuVal and John Henson Clinical Research Professorship. Plain English SummaryEngaging patients as partners in clinical research, known as patient engagement, is a growing practice that has numerous benefits. However, uptake in preclinical laboratory research (e.g. cell and animal studies) has been limited. Nevertheless, incorporating patients as active collaborators at this discovery stage of biomedical research may be beneficial. To better understand how patient engagement fits into preclinical research, we conducted interviews with patient partners and preclinical researchers who have been early adopters of this practice. Five key themes emerged. First, both groups emphasized the need for adopting a thoughtful and tailored approach since preclinical research is not typically patient facing. Second, shared vocabulary was important to facilitate communication. Third, setting clear expectations and outlining varied goals for engagement was considered critical. Fourth, understanding the value of preclinical research helped ground engagement efforts. Finally, interviewees felt a cultural shift is needed for this practice to be accepted more widely. These themes are important factors to consider when engaging patients in preclinical laboratory research; they may be used to inform and support future preclinical patient engagement efforts.